“Relying on Charity is not a Sustainable Solution”

Throughout our nation’s history, the strength of our country has been deeply rooted in the daily acts of service that so many people render to their communities and their loved ones. Yet for others, the right to realize their full potential, as citizens and as unique individuals, is endangered by the overwhelming limitations imposed upon them by poor health.

Today, there are few drivers of health inequity as ubiquitous as the staggering cost of many essential prescription drugs in our country. This crisis is harming our nation’s communities and families, and makes it needlessly difficult for individuals to obtain the medication they need to thrive.

Linda of Edmonds, Washington, is one such individual.

Despite a rheumatoid arthritis diagnosis in 1993, her access to a state-of-the-art biologic drug, Enbrel, enabled Linda to continue to lead an active life as a graphic designer at a cancer research center, and retire at the age of 66.

Tragically, retirement signaled the beginning of Linda’s problems with unaffordable drug pricing. Upon making the switch from employer-sponsored coverage to Medicare, Linda discovered that her medication, which had long helped her to live life as she wished, was not covered under Medicare. As she could not afford to pay $1,500 a month out of pocket to continue Enbrel treatment, she was forced to switch to a medication that Medicare did cover, Orencia; a painful, intravenously administered drug that required her to travel a considerable distance to the nearest hospital every month.

For six years, Linda endured this routine. In 2018, she finally succeeded in switching back to her preferred biopharmaceutical, Enbrel, through the assistance of a charitable program.

Though Linda has been on the same medication since 1998, she has watched as the pharmaceutical company’s practices have changed. At first, the drug was self-administered through a syringe, and while it was expensive, it was never out of reach. Now, the same drug is administered through an autoinject pen, and the price has continued to climb. Since 2011, the sticker price of Enbrel has more than doubled.

There is no sign that the cost will stabilize or stop rising. Thanks to the introduction of the autoinject pen, the pharmaceutical company was able to extend its patent protection. As a result, a cheaper generic may not come to the market until at least 2029. This practice allows the pharmaceutical company to maintain its monopoly on the drug, keeping people like Linda at the mercy of the company’s arbitrary pricing schedule.

While Linda is grateful that her drug is currently covered through a charitable program, the arrangement has not brought Linda much peace of mind, as she now must go through an income-based reapplication process every 12 months. She knows that continued support is not guaranteed.

If Linda is ever denied access to this drug, or if the program suddenly ends, she would lose control over her life. She wouldn’t be able to engage as deeply in causes she believes in. She would lose the ability to walk.

Over time, she says that she would succumb to the same treatable disease that crippled her aunt and her grandmother, despite decades of new medical advancements that can keep her healthy.

It is unacceptable that the quality of life of so many in our nation has become dependent on inconvenient and inherently unsustainable workarounds like the one Linda now has to live with every day. The only real solutions rest in treating the scandal of unaffordable drug pricing as a systematic problem that drives up health care costs and hurts consumers like Linda.

In order to ensure that everyone has access to affordable medication on an equitable and affordable basis, action must be taken now to rein in practices that drive drug price inflation. The process will be difficult, but we owe this guarantee to individuals like Linda: that they will be able to offer their unique contributions to the common life of our nation — now and in the future.